“We have begun investigating ways to understand and end inequalities in research and treatment, and to better meet the needs of women. The Women and PD Initiative is a first step toward connecting the power of our vision, energy and resolve to change this situation.”
Robin Morgan, committee member, Women & PD Conference
“We are launching the first PDF Women and PD Conference so women have the chance to come together with others who are traveling the same path. Our hope is for each woman to leave the Conference with a new cache of life-enhancing skills that she can share with women in her own community.”
Karen Smith, committeee member, Women & PD, Vice Chair, PDF People with Parkinson’s Advisory Council
Background & Goals
Why is PDF looking at the specific needs of women? Because men and women experience PD differently, as it relates to their symptoms, medications, medical care and support services.
In 2013, PDF conducted a review to understand the needs of women with PD. Our methods included a community survey, focus groups of women with PD and movement disorder specialists, and a review of the scientific literature.
The clear conclusion? There are significant unanswered questions and unmet needs when it comes to women living with PD and their disease experience, participation in research, medical care and support services (see highlights below) -- yet there is no coordinated national effort to identify and address their needs.
Through the Women and PD Initiative, PDF is filling that gap. We are shedding light on and finding solutions for women-specific issues to help improve the health and well-being of women with PD.
Research indicates differences and disparities including:
- Women, when compared to men, experience a longer duration of time between onset and when they see a neurologist specializing in movement disorders;
- Women are also less likely to see a neurologist at all;
- Women experience differences in PD presentation and response to medication;
- Women are underrepresented in clinical research; and
- Women with Parkinson’s face burdens that are unique to their societal roles.
According to a PDF survey, women living with Parkinson’s identify as having gender-specific issues that are not addressed.
- 72 percent of women living with PD say that there are issues specific to women with Parkinson’s that they feel are not anywhere addressed;
- 88 percent think there is a need for resources and information focusing on the specific needs of women;
- 91 percent never received these types of information and/or resources;
- 91 percent said that there are no specific meetings, conferences and/or support groups for women with PD in their communities; and
- 89 percent stated that they would participate in women and PD meetings if any were available in their area.